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Survivors Needed

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LauraT View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote LauraT Quote  Post ReplyReply Direct Link To This Post Posted: Mar 30 2011 at 8:30am

Grandma - thank you so much for your encouragement!!  It helps to hear that there are long-time survivors out there.  Enjoy the wedding!!

Laura
DX 10/09 @44, Stage I IDC tnbc, DCIS other side, Neoadjuvant TCx4, Bilateral Mastectomy w/Recon 1/10, 1.2cm 0/7 Nodes, 5/11 Mets to Lungs/Lymph Nodes, Avastin/Taxol, 10/11 Bone Mets, Xgeva
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Charlene Quote  Post ReplyReply Direct Link To This Post Posted: Mar 30 2011 at 10:47am
Grandma,
 
Thank you, thank you, thank you for your posting!  It is so wonderful to hear stories like yours!
 
Charlene
DX 3/10 @59 ILC/TNBC
Stage 1, Grade 2, Multifocal; Lumpectomy/re-excision
SNB 0/4 nodes, BRCA-; Taxotere/Cytoxan X4, 30 rads
3/14:NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Barbi Quote  Post ReplyReply Direct Link To This Post Posted: Mar 30 2011 at 11:07am
Thanks Grandma.  You know how much your post means to us all!
Barbi
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 30 2011 at 11:26am
Grandma we are so happy you found us, congratulations and hope to hear more from you in the future.
Stage 2 2003
Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote jadesloge Quote  Post ReplyReply Direct Link To This Post Posted: Mar 30 2011 at 6:55pm
I don't post here much. I am just a few months shy of 3 years. I have had the usual ups and downs and a couple of small scares, but overall, nothing but good health. I even went about two years without getting a cold! Last summer I did 3 short triathlons and this summer, I plan to do 4! It will get better, it takes some mental work and for me a lot of praying, but it will get better....I also feel blessed because I have made a great friend who went through nearly the same treatment as me at roughly the same time. We are our own little support group. It does get better!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Mar 30 2011 at 11:56pm
Hello KitKat,
June 9th will be 5 years since my diagnosis. June 15th will be 5 years since my mastectomy. November 15 will be five years since my last treatment.

I'm going to claim my diagnosis date to begin my 5 years. I've had some scares and stressors along the way. Those 3 mo. follow-up and 6 mo. follow-up jitters. It is getting better and I thank all who have taken time to post here to share your story with us. We all need to hear the long time survivor stories.

Thanks to all of you.
God Bless,
Lillie
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2015-9 yrs NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mamawof4 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 31 2011 at 12:30am
APRIL 9 will be two years for me that I got the dreaded call from my surgeon to say it was cancer. She cried, I cried, and my wonderful hubby cried. And I was at my mothers grave when she called. It was my moms birthday and it was just one year that she was gone. And I was already crying. So to hear that it was cancer really broke my heart. But this year I will vist her cancer free. Thank God and for my wonderful family I made it. And yes I still live in fear with every ache and pain. I am getting to be false alarm queen of the family. I still have body aches with fibro and arthritis. And now I have two pinched nerves in my lower spine. So I have more surgeries looking at me in May. But I am a SURVIVOR AND I WILL SURVIVE. :)
dx 4/9/09 with stage 2a grade 3,one node cancerous, lumpectony,10 radiation treats via mamma site,8 chemo treat with 4 a/c and 4 iexempra thur clinical trial finished 11/25/09 PALB2 gene+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote outnumbered Quote  Post ReplyReply Direct Link To This Post Posted: Mar 31 2011 at 7:29am
August will be 3 years for me...  It gets easier with each day. 
Its great to hear from you Grandma.  We all need inspiration from you longtimers! 
~Sara

DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG

BMX (nipple-areola-sparing) 8/5/08

Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09

BSO 9/3/09

NED since 08/05/2008
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CTB Quote  Post ReplyReply Direct Link To This Post Posted: Mar 31 2011 at 8:48am
I have a question for those who are long-term survivors and those who are on their way to becoming long-term.( 3 years out or more) Have you made life style changes that you feel were helpful in preventing a recurrence? I think the Oncologists know the drugs and the rads but share little information about elements that may or mat not influence cancer. So my questions are: Did you give up alcohol, whether it is wine, beer, etc? What about sugar? Did you purposefully eliminate this as much as possible? What about eating meat, especially red meat products. Did you switch to organic products? If you were not an exercize person do you now exercize daily or several times a week? Did you incorporate certain supplemetns or vitamins into your daily regime? I know this is a lot of questions but I really am curious as to whether or not long-term survivorship and certain lifestyle changes really are linked. Thanks in advance to those long-term survivors who respond. 
Dx: 12/10/09; Lumpectomy and SNB 12/28/09 2.0 cm tumor 0/5 nodes; clear margins; TC x4 ended 4/10; 33 rads ended 7/6/10
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Post Options Post Options   Thanks (0) Thanks(0)   Quote M Alison Quote  Post ReplyReply Direct Link To This Post Posted: Mar 31 2011 at 10:26am
I don't fit your definition of long-term yet, but I will be 3 yrs out in Sept.  I feel great and have no lasting negative physical effects from my ordeal other than the obvious loss of a breast.  I lived a healthy lifestyle before and still got cancer.  So I haven't made that many modifications.  I added daily vit. D, based on information I learned from this site.  I switched to some organic products but not all.  I switched to filtered or bottled water rather than tap.  I quit the artificial sweeteners.  I eat almost no processed foods now.  My husband loves to cook and he makes healthy meals of mostly fish and chicken plus salads and veggies.  I have red meat once/week or less.  I have not given up alchohol, but have cut back some.  I think it is possible that giving it up may lower my risk, but I am not willing to forego the glass of red wine that I share over dinner with my hubby each night.  It adds to the pleasure of living, for me, and I'm not willing to give that up.  I still eat sugar occasionally, I am not willing to give that up either.  As before my dx, I continue to exercise 4-5 days/week, bicycle, walk, watch my weight, and am an overall active person.  I would be doing this regardless of bc, because it adds greatly to my overall health and quality of life.
 
So other than a few minor changes, no, I haven't changed my lifestyle much.  If I were a young woman with small children to raise I might have made more drastic changes in my diet, but at this stage of my life with my kids grown, I want to enjoy fully whatever time I have left - whether it's one year or 30.
 
I still worry about a recurrence.  But as time goes on I worry a little less.  I still don't think long-term about my life, not yet.  I look ahead to the next year and hope I'll get through the next vacation, graduation, event, etc.  Then when I make it through, I start looking ahead to the next.
 
Hope this helps and I wish you and everyone all the best,
Alison
Age 55, Dx 9-08 TNBC, mast 10-08, stage 2, 1/6 nodes, AC + Taxol + Avastin, rad, BRCA1&2 neg
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elfdream View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote elfdream Quote  Post ReplyReply Direct Link To This Post Posted: Mar 31 2011 at 10:39am
Those are good questions and ever since I joined this group I have been going over what I have and haven't done over the past eight years.

I never drank alcohol so that was never a factor.

I don't exercise all that much. I walk...that's about it.

I don't drink bottled water. Right out of the tap is fine.

Any eggs I eat are  organic/free range.

I gave up  white sugar almost completely. I do not eat anything that has over 10 grams of sugar at the most but I did NOT do this because of the BC. I was diagnosed as pre-diabetic. I used artificial sweetners until stevia came on the market and then I switched to that.

I do not eat red meat but I never ate red meat all that much to begin with. I do eat LOTS of fish.

I did not take any supplements of any kind. I try to get my nutrients through a balanced diet.

I am lactose intolerant so I don't eat a lot of diary. Once again..calcium through diet. A cup of spinach goes a long way. :)

No processed foods. We don't even have a microwave. Almost everything is cooked 'from scratch'.

I keep my room very dark at night and try to get at least 30 minutes of sunlight a day without sunscreen.

 I can't think of anything else. I hope it helps but it might end up confusing you. Hope not.




Edited by elfdream - Mar 31 2011 at 10:42am
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Post Options Post Options   Thanks (0) Thanks(0)   Quote outnumbered Quote  Post ReplyReply Direct Link To This Post Posted: Mar 31 2011 at 11:11am
I am also not that far out yet, but here is what I do.
 
I now see a nutritionist and try to eat a healthier, lower carb, higher protein diet.  She has actually given me a supermarket tour and has shown me many healthy options that I would not have normally tried.  Other options that I thought were healthy, I found out are not.  I began this mostly to contend with weight gain which I thought was a result of surgical menopause.  I have come to find out that it was from the effexor which I was given to combat hot flashes.  I am now off of the effexor, and have lost weight. 
 
I am really trying to exercise more.  I just started yoga. 
 
I do not drink.
 
I LOVE red meat and chocolate.  I limit this. 
 
I take a weekly 10000 IU D3 supplement.
 
OK, Please do not yell at me, but...
I recently participated in a round table discussion with research MDs regarding environmental effects on breast cancer.  The concensus was that it is not necessary to go organic.  The amount of toxins in our everyday foods are not concentrated enough to cause any harm.  The testing done on the toxins are done at extremely high concentrated amounts, much higher than normal intake, therefore the results misrepresent the danger.  Also, many foods that are labeled organic are not truely organic.  It is felt the most harm we do to ourselves is to not eat a BALANCED diet, and to not exercise.  Excess body fat and inactivity are larger risk factors.  If we are eating a healthy diet, that of course will cut out much of the sugar in our diets. 
 
That all being said, I tried to go organic a few years back, and my family revolted.  Its also really expensive.  For me, I have found that if I go on a drastic diet that makes me feel deprived, I will eventually flip out and binge.  Now that I am making heathier chioces, I am doing fine and this has become more of a way of life than a diet. 
 
 
 


Edited by outnumbered - Mar 31 2011 at 11:27am
~Sara

DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG

BMX (nipple-areola-sparing) 8/5/08

Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09

BSO 9/3/09

NED since 08/05/2008
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elfdream View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote elfdream Quote  Post ReplyReply Direct Link To This Post Posted: Mar 31 2011 at 12:01pm
We aren't going to yell at you! The only reason I eat the 'organic' eggs is because I found that 'regular' eggs gave me gas and stomach aches. :)
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Post Options Post Options   Thanks (0) Thanks(0)   Quote paula Quote  Post ReplyReply Direct Link To This Post Posted: Mar 31 2011 at 1:23pm
I'm a 7 year survivor.

I was diagnosed at the age of 43.  I originally had a lumpectomy but in March of 2009 I decided to have a prophylactic mastectomy (I ended up obsessing over whether the cancer would return in my breasts). I had a total hysterectomy at age 34 so I did not have to worry about cervical/uterine/ ovarian cancers.

I only received 2 cycles of CEF because I developed Capillary Leakage Syndrome and they had to take me off chemo.  The onc told me I can never have chemo again and that the syndrome is permanent. As well I developed chronic pain in my lower back which is a problem for me and hypothyroidism.  I had 25 sessions of rads with 5 rad boost sessions to both the back and front of my clavicle and the entire left side area. I feel optimistic but will not feel like I'm free until I reach the 10 year mark.

My friend was NED for 7 1/2 years when her TNBC came back she died last year.  I really miss her.  I look at is as the glass half full and it gives to me hope that i will be around to see my grandchildren grown.  My son and his wife are expecting identical twin girls.  This is there 1st pregnancy.

I still worry about it coming back to bite me in the butt. I think this is a natural reaction to the unknown. I lost my daughter 13 years ago so I'm not afraid of dying, it is in the suffering of the disease that scares me. 

God decides who lives and dies, who must suffer losses.  He has a plan and we must have blind faith that when it is our time He will call us home, but in the mean time live each day as if it is your last and take time to enjoy sites, sounds and life around you.
DX Feb 4, 2004
Lft NST IDC, 1.1 x 0.5 x 0.4 cm,
Stage 1, GR 3, 1 of 17 nodes
CEF 2 of 6 cycles
30 Rads w 6 boosts
Regina, Sk Canada
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Post Options Post Options   Thanks (0) Thanks(0)   Quote paula Quote  Post ReplyReply Direct Link To This Post Posted: Mar 31 2011 at 1:32pm
The only life style change I really made was to quit smoking.

I am taking B12 because it is low, a multi-vitamin, Flax oil to lower my cholosteral, calcium and vitamin D3 and Magnesium Citrate.

I try to eat relatively healthy but that doesn't always happen

I'm caucasion, obese, have problems with exercise due to chronic back pain and problems with my shoulders, neck, knees, feet, toes.

But so far so good
DX Feb 4, 2004
Lft NST IDC, 1.1 x 0.5 x 0.4 cm,
Stage 1, GR 3, 1 of 17 nodes
CEF 2 of 6 cycles
30 Rads w 6 boosts
Regina, Sk Canada
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Post Options Post Options   Thanks (0) Thanks(0)   Quote janet c. Quote  Post ReplyReply Direct Link To This Post Posted: Mar 31 2011 at 1:35pm
I was just a 2yr. survivor 12/30/10. As soon as I was diagnosed I started to take vitamin D with D3 and fish oil. I am a type1 diabetic and was told to switch to Stevia so I did. I made sure I excercised until I had hurt my foot and I am now getting back into it. My oncologist just told me to only have 30grams of fat per day. I never drank any alcohol before dx. and still don't because of my diabetes.

Edited by janet c. - Mar 31 2011 at 3:18pm
dx 12/08 @47yrs.old TNBC stage 2a grade 3, 2.1cm. partial mastectomy sentinal node negative BRACA negative Cytocan/Taxatere x4 radiation 36 or 38rounds
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Post Options Post Options   Thanks (0) Thanks(0)   Quote outnumbered Quote  Post ReplyReply Direct Link To This Post Posted: Mar 31 2011 at 1:41pm
My nutritionist has recommended organic eggs as a treat and there is a farm nearby.  Maybe I will find myself there soon.  My kids and husband eat eggs often (me-not so much).  They also raise pheasant at that farm, so perhaps I will try those eggs as well. 

Edited by outnumbered - Mar 31 2011 at 1:41pm
~Sara

DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG

BMX (nipple-areola-sparing) 8/5/08

Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09

BSO 9/3/09

NED since 08/05/2008
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Post Options Post Options   Thanks (0) Thanks(0)   Quote elfdream Quote  Post ReplyReply Direct Link To This Post Posted: Mar 31 2011 at 1:58pm
I had a total hysterectomy as well. I had some  non cancer medical issues going on.

I pretty much use olive oil and spreads like smart balance for my fat. The 'good' fat. I also try to keep it down below 30 Grams a day.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote denise07 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 31 2011 at 2:54pm
I will be 3 and a half years out april 3rd, I try to eat healther.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote BreastFree Quote  Post ReplyReply Direct Link To This Post Posted: Mar 31 2011 at 7:18pm
I have changed my eating, last night we made Turkey-Taco with ground turkey that is...They were so good. I do Love Veggies & Fruit, don't get enough I'm sure. I've been really down lately. In Aug. it will 3 yrs. Since I had surgery. 

Edited by BreastFree - Mar 31 2011 at 8:46pm
I'm Breast-Free By Choice!
Aug.2008 TNBC Surgery Left Breast & 27 Lymph Nodes 3 Positive , Oct.2008 8 rounds of Chemo,May 2009
28 Radiation,Sept.2009 had right breast removed.
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